CF, Drugs, and Rock n Roll!

You know it's funny that I've always said I'd never make a blog on narcotics and CF, and here I am doing just that. This may be a bit wordy, I apologize now!!!

For a little back story let's go back a few months maybe even years. As I progress in my disease being "end stage" and no transplant option, my lungs get worse. My breathing gets more complicated and the pain associated with it continues to climb. 

One thing I have always been proud of is my way of pushing through this pain and only using pain medication during hospitalizations. Sadly that needed to change recently.

☆I would push through the pain all of these years, because I pretty much had to and it's wasn't as bad as it is now. My particular CF makes it difficult to absorb ALL oral medicine properly. Not all CFers have this problem, which is just another sign that we are us first and the disease second. That problens makes it scary to double or triple pain meds at home in hopes that they work.

As many of you follow me and know my ups and downs as of lately, you know my health has made a downward spirl. Making the days at home harder and harder to cope without pain control of some sorts. Long story short I was proscribed home IV Diludid along with home IV Benadryl, as I have an allergy to the Diludid.

With this combination at home I have been able to have a better quality of life and could even lower the amount of oxygen I needed do to less pain. Taking Benadryl regularly has acted as a bronchial dilatator opening my airways making it possible for me to accomplish what I try to do. It has also had an effect on my mood and with the everyday activities I was having such problems with. Like showering alone, cooking, walking my dogs, going to the mall alone, caring to do my hair and makeup, and so fourth. Of course I still needed to wear my o2. No miracles here!

☆This combination of a small dose of narcotics and an antihistamine has been a game changer in my life these past few months. One that I would love to figure out how to do a medical study on the matter. More so with the side effects of the Benadryl and my lungs.

Here comes the monkey wrench!!!! My life is CRAZY. Things happen that would never happen to anyone else, but me. I have found myself in so many unbelievable situations that if I wasn't there and there wasn't some type of report of these things I would not believe them either. So, that being said I have needed my meds sooner on some occasions do to out of town trips, doctor appointments (before I found out the infusion company was in my town), court dates for one of those Sandi only situations, a nurse jumping the gun, and hospital stays that left me with them being thrown out while I was hospitalized. Another long story.

☆Trying to make this a short story bare with me here.

Last Friday I was discharged from the hospital! Discharge papers in hand, PORT pulled, street clothes ON, ride at the door. A doctor came in telling me how to follow up with blood draws for the levels of the IV antibiotics at my PCP ' office. She told me that everything was good to go. Before she could leave my room another doctor came in and said, "We pulled your discharge you have to stay here until Tuesday to get your IV antibiotics approved through your insurance for home health. The fact that it was the holiday weekend and the end of the work week they wouldn't get to it until Tuesday."

I was PISSED! Here I stand discharge papers printed and signed in hand! Being told that my health didn't warrant urgency to those who work 9-5 Monday through Friday at the insurance companies, because they had a holiday weekend. Staying an extra 4 days could jeopardize my health being in a hospital environment after I started showing progress, which I didn't want to risk!!! The doctor then informs me if I didn't stay I would be leaving AMA. Well, I was angery, upset, and irritated. I had my discharge papers, so I left! That's when all hell broke loose.

What I did not know was that the infusion center had gotten the antibiotics approved that same night at 6pm. I, however, was never called or told that they had gone through. I thought the antibiotics wouldn't be worked on until Tuesday as that is what the doctor had told me. So, I waited until Tuesday and no call. Wednesday rolled around and I called and was told I was no longer allowed to receive medications from them because they believed I was "Lying" and trying to "doop" them for the pain medication. Which, I can assure you is not and never has been the case.

I then later get a call from my Dr. at Ruby Memorial who proscribes those medications for me, knowing I need them. Knowing I am not a drug seeker. Yet, he has now decided to not proscribe anything else for me and will be making a note stating I have a "history" of narcotic drug seeking. I was told to go to Chestnut Ridge for addiction issues other than that he was no longer working with me. 

☆I'm not addicted to them, so that wouldn't even help. I admit when we first started this course (Back in Feb.) I was having a small problem, but I pushed through and fixed it with the help of my husband and an amazing friend talking with me.

☆Here is what all my babbling is about right now, sorry! I said stay with me.

Because, I have a life where my roller-coaster derails almost every day. I have things that go on that I can't explain and it may sound fishy, sadly I can prove every single thing that happens in my crazy ass life. But, because of a misunderstanding of a doctor telling me that me staying over a holiday was more important, then saying I went AMA when it really wasnt, and calling me a liar I am screw for pain control!! I can NO LONGER get any type of pain relief. No one will proscribe anything due to a "history" that I now have losted and do not agree with or is it true.

What am I to do in a few months when my breathing is worse and my lungs are worse? I will have to suffer in pain with every breath, every sneeze, cough, and yawn. Because, of something I am being accused of based on my hectic life and circumstances being shitty. How can they deny someone with legitimate reasons to need pain control based on BS, yet those who are doing what I'm being accused of get their meds like clock work.

Irritated and Disappointed,
  Sandi

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True Love

Laying next to the most amazing man, listening to him breathe, and looking so peaceful, I can't help but reminisce to the passion I was once able to show my husband. The hunger for his love that ran through my body is still there, but the actions are nearly impossible.

For years I couldn't stop myself acting like teenagers half of the time as soon as he'd walk into the room. Now, I feel like a 97 year old woman with a broken hip. The rush is there, the desire is there, the heat has always been there. The only thing not there, is me! I can't even walk to my dresser any longer let alone try to have relations with my husband.

I find it interesting and very depressing how quickly things can change. What once was a head over hills get a room type of passion is only possible for one of us. Sadly, it is no longer me. What we have is a beautiful love for one anothers soul, the person we have become, and our love of life more so than our bodies.

☆Trust me I know that the love and the bond we have for each other is stronger than anything in the world. I cherish our relationship and our love more than I think he even knows. In reality this situation bothers me more than it bothers him.

As I get older and this disease takes a stronger  hold over my body, I find myself longing for those days of being healthy. Seeing him laying in bed beside me cuddled up with all three animals makes my heart skip and tears fall from my face. I can close my eyes and remember his arms pulling me tight and we would make love until the sun came up. Feeling his strong arms around my waist and seeing the look in his eyes just takes me away to another place and time. A time where I could breathe and nothing could stand in my way when it came to anything, not just the topic at hand.

My diagnosis was bound to eventually take over every aspect of my life. I just thought I had a little more time. Now, it has finally taking my capability for a love life away. From what was at it's highest peak down to nothing at all. I knew this would happen eventually as each year everything gets harder and harder to accomplish. I was only hoping that it wouldn't happen at 28.

I was hoping to have a few more years left before I would be where I am today. Sadly, CF is finally controlling the spark that started years ago for the man that I fall deeper and deeper in love with everyday. The man who can turn me on with only his amazing smile.

☆The worst part is that he is getting the short end of the stick and it KILLS me! I feel like half a woman. Like I can no longer please or take care of my man and it hurts so much. CF has taken a lot from me. The ability to work, drive a car, go to school, make it to events, concerts, just about everything and now this.

All of the passion that once ran through my body for this man like lightening striking down on me has been taken away so quickly. All because of the air I breathe or should I say the air I can no longer breathe? The love and the desire I once had before is still there and stronger than ever. I just do not have what I need to act on these feelings and it is frustrating and depressing more than anything.

How can this be? How can it take away my ability to physically love my husband? We would lay in our bed at all hours of day, legs intertwined, bare skin on skin with a hunger for one another. There was nothing that could stop me from touching, kissing, or holding the man of my dreams close to my body. That is no longer the case and has sadly been left on the back burner. Thanks to Cystic Fibrosis. Each day it eats at me a little more and there is nothing I can do! Nothing I can say. Just nothing!

Now, don't get me wrong we still love one another more with each day! The passion for one another is still there especially for him. I am just no longer able to act on those urges as I would love to. I used to have so much energy and planned so many romantic nights just to make our love life perfect and amazing. Now, I am lucky to kiss him more than twice a day.

The fact that my feet barely hit the floor anymore, my hair is never brushed and I am always a mess. I know that I have a medical smell, I never wear make up and am in the same pj's for days at a time. My body is rarely bathed, scared and ugly, and now I am down to 99lbs and my weight just keeps dropping. What do I have to offer this incredible man?

I am nothing as what I once was. I am not the beauty he met and fell in love with. The model I was long ago has faded into the depths of my memory and staying in the past. I am so ashamed of how I look and even sickened for who I see in the mirror each day. I hide in the memories of the way I used to look and ignore mirrors as much as possible.

☆Ours is a love that burns inside our hearts that will never fade away. I just wish it didn't have to be this way.

I have begun to blame myself and even starting to hate this part of who I am. The medications, treatments, and hospital stays make me weep in bed every night. I can feel his breath upon my skin and my body begins to shake. My heart starts to race and in my mind I am that young, healthy, energetic, sexy woman I was when he first fell in love me. I want so badly to roll around in the sheets with him, laughing and running around the house in nothing but his tshirt. Just for him to catch me, lift me up, with his hands on my body and my lips on his skin!

☆I can't even imagine what that feeling is like any more.

This is a pain that no one knows, no one but me. It hurts worse than any surgery, tattoo,  or infection I've ever had. How do I explain it all to him? How do I explain it to myself at all when all I see in myself is a sad shell of the woman I used to be.

Instead of being caught up and tangled within each other, I am wrapped up in oxygen cords, caught up with medications every 4hours, and can hardly make a move on my own. My body so frail and weak, I have a coughing fit with every breath I take, and my life has become so meek. I was once a beautiful woman with passion that ran so deeply and only for him!!

This disease is so ugly it is so cruel and it doesn't care about your plans or who you are. It doesn't take mercy on your love life, your personal life, or your goals. I never thought I would be in this boat and feel this way at 28.

To understand what it going on would be impossible unless you are in this situation. All I know to do is smile at this amazing man who has devoted himself to me. Pray that he doesn't resent who I have become, in turn making him the man he is today. It makes my skin crawl at the fact that he is now my caregiver more so than my husband and lover. I sometimes feel as if he thinks of me as a burden. As he is the one who has to be both the man and the woman within our house hold. Taking care of the animals, myself, the cooking, cleaning, laundry, working double shifts to pay bills, grocery shopping. He does it all without a complaint and still loves me. He truly is amazing and I don't deserve such an amazing man.

☆I sometimes worry it will be too much for him and he will leave. That is my biggest fear at the moment! Not death, not sickness, not surgery, or lack of friends. I can't lose the man that brings me the sun and the moon, but if it was me I can't say for certain that I would have stayed as long as he has. Only true love and devotion would make a man stay with a woman like me. Going through all of this with him makes it easier on me, but I worry so badly he will eventually want someone who can do everything that I can not. Domestically, physically, and intimately.

So thankful for true love and devotion,
   Sandi

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Jealousy

In this life there are so many things that people are jealous of. Be it someone's physical appearance, wealth, love, education, or talents. You name it and someone somewhere is jealous of something in your daily life. Although, we are human and can be jealous for multiple reasons, try to find a way to turn that jealousy into a better you. Strive for the best and be true to yourself. If you can admit what you are jealous of in this life you can change your way of living and be thankful for your insecurities.

Me, I am jealous of the women who have sex once in their entire life and become pregnant and then they sadly don't even want the, "oops" baby. I am jealous of women who can get gifts for their loved ones, because they have money. Which then leads into my jealousy of those who are able to hold a job and keep on pushing to make an honest living. I am jealous of those people who have perfect lungs and choose to smoke!

☆Yes, you read that correctly! I am jealous of those who have amazingly healthy lungs and mistreat them. It is irritating seeing people take something so precious and poisoning one of the most important organs, for a terrible addiction. Taking their lungs for granted and never even sitting back to think about how lucky they are that they had healthy lungs.

I am jealous of those who can climb stairs and walk a mall without having the take long breaks to catch their breath or to stabilize their oxygen levels. I am jealous of people who have never had to take medications or do anything medical. Better yet, those who have never had to spend the night in a hospital! I am jealous of the CFers who have 60% or higher PFT's just to see 20% pop up on the screen next to my name.

☆Don't get me wrong I am so happy and proud of you, but I can't help but be irritated and a little bitter by seeing high numbers while my dwindle down daily.

I am jealous of the strength my family and friends were forced to have when it comes to this disease. As I know these 27 years and especially the past few months have been hell, they have all been there to support me. Sometimes I wish they would break down too, so I know for sure I am not terrified alone.

I am jealous of the Cystic's that can have a lung transplant with a good odds and a chance of living longer. I am jealous of those who have a huge following for "awareness", when all they do is post selfies with oxygen on using generic quotes they found online in a Google search. While I aim to educate, give advice, and share my life with everyone. The raw story of my life the good, the bad, and the ugly to only have a hand full of people who know my name, not just the blog or the "Behind the Smile of a Cystic girl".

I am jealous of those women who have no scars and can show off their cute flawless belly's, while I am too worried I will sicken people with mine. I am jealous of those who can just get into the car and spontaneously go wherever their heart desires, without having to properly pack meds, snacks, and nebs. Or having to make sure you have enough oxygen tanks to last however long you plan to be out.

When it boils down to it I am even jealous of who I used to be. The person I will never be able to be again. I long for the days without oxygen and miles I could walk without being winded. Climbing stairs and holding down jobs. Not having to stay home most of the time, because I have no energy. I miss the girl I once was and boy am I jealous of her!

This world is full of jealousy, hatred, and flattery, it is figuring out which one will benefit you better as to which one you personally believe in and think about.

☆I truly took my "good health" for granted and never saw this situation in my future. Who would? Always cherish each day you have, because one day you may not get to do it again.

This disease leaves a door open to be jealous of a lot of things and people. Although, I honestly don't think that any of that is a negative thing. Knowing I am jealous of these things makes me appreciate what I do have and makes what I can and have done that much more meaningful to me. It helps me realize life for some people comes easy and it takes a mountain for me to succeed. I am very proud of the mountains I have moved in my life just to say, I did it and I am here today.

☆So, never be ashamed to be jealous of someone or something for any reason. Just know that you can push yourself to be the best you that you can be and you never know maybe someone, somewhere is actually jealous of you. 

☆Which is the highest form of flattery and I mean that. It's not just a smart ass comment.

Jealousy is love,
   Sandi

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Looks CAN be deceiving!

On days like today I wake up, looked in the mirror and see a sick, pale, sunken eyed girl starring back at me. This isn't the me I know and it isn't the me I imagine I am without a mirror. I want to simply see the model, the Hooters girl, the Playboy hostess, the pageant queen, and the fun loving woman that I used to be. However, the woman I see in the mirror is not what everyone else sees in my photos. I see a weak and frail aging disease. It is hard for me lately to see through the sickness to see, "Sandi"

To most people I do not look sick nor do I act sick. I always have a smile on my face, always a positive tone of voice, and hardly ever let anyone see me as anything less than "amazing". I hide my oxygen to take photos, for the most part. I do have some photos with it on and I cringe when they are posted. I feel so ugly, I feel sick, and defeated by something that is impossible to fix, beat, or over come. I have mastered the brief second without my O2 that it takes to snap a photo! Out of sight and out my mind at least for a moment.

There is a HUGE issue that comes along with being able to do this and wanting to "look" like the old me. People see me as being healthy. I am talking about everyone who can see me on social media, family members, friends and those closest to me. Don't get me wrong I am not upset over this as it is confusing to see one thing and hear me say another. Seeing is believing and well if I look and act fine then there is nothing to say otherwise. Unless I complain or moan and grown about it and that is something I try very hard not to do.

☆What is the point in complaining about medical things that will never reverse themselves or get 100% better? Life is worth living and not being to lost in the sadness of your disease.

I do not speak for any CFer other than myself, but I am sure some can relate when I say it is hard for our loved ones to really see and understand how this disease is taking control when we put on such a strong front.

Laughing, smiling and having a "good" day for me is one of the most difficult things that I do each day. When I get home all I have energy for is, well nothing. Especially after a hospital stay, a long period of having to be in the ICU, on a vent, or having surgery.

I always snap back to a happy person, I smile while going under sadation and I smile while waking up from it. I always make sure I look "cute", and still try my best to push myself as far as I can. So, it is understandable when the ones closer to me and especially those who only see me via social media, to see me how I am on the outside and how I act in front of them to think that I may be making up what I am truly going through. Why? Because, I refuse to show how painful I feel inside.

Sometimes we are so head strong that people actually start to think that nothing is wrong and think that as a Cystic we use it to be "lazy". The funny thing is I really wish I was just being lazy. Life would be so much easier if it was just a fib to get out of doing things. Mentally it bothers me to not attend parties and events for my friends and families. I am always wondering if they believe me or if they just think, "Sandi is playing the sick card again".

Just because I look fine to everyone else, I am not fine on the inside. I am not breathing as easily as a "healthy" person, I just act like it. I do not sleep restfully, because my body is working in over drive to keep me alive! Making my oxygen drop while I am sleeping which is just scary really because no one monitors how low it gets while I am home. Just doing simple activities like showering, dressing, or even making my bed can put me down for the rest of the day. Hell, I haven't been able to throw a load of clothes into the dryer in over three years.

So even though I (we) look fine, smile, and have a great outlook on life, please do not assume that I or any other Cystic's are just saying something to get out of everyday activities.

☆I promise the majority of us wish with all of our hearts that we could do the things we used to be able to do without being completely worn down for the rest of the day.

I am also very stubborn as I refuse to ask for help when I normally need it. I don't want anyone to look at me as a disabled person, so I push and push myself to the point of actually making myself sick. I do know that once I put my pride aside and allowed my husband and family to help me with even the smallest tasks things have been a lot easier.

It is hard to ask for help when you are used to being strong and independent. Support from our loved ones is the number 1 thing that we all need. Even if for some reason you think that I may be "trying to get out of doing something" don't jump to conclusions. It only makes things more difficult and emotional for me or your CFer. I am sure others have felt the same way at least once before.

If you take anything from this blog and you are a caregiver of a sick person, someone with CF, or otherwise show them all the support you have. Make sure they know you are there when times get hard and if they need help don't question them or belittle the situation, simply help them, be there for them, and put a smile on their face!

Never down play a disease that you yourself are not fighting. Luckily with CF if you don't personally have it, you will never know the struggles we go through or the pain we are in just to get out of bed some days.

I Am Only Human,
  Sandi

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"End Stage" CF

The words "end stage" are two words that no one ever wants to hear. To be completely honest I never thought that, Cystic Fibrosis even had a "stage" until recently, when I was diagnosed as "end stage". 

Normally when referring to stages in any disease your mind tends to go to cancer over other diseases. The truth is, all life threatening diseases have a turning point when it gets to what can be considered "end stage".

I want to explain a little more about my new situation, my plans, and what my mind set is at this point in my life.

First let me say, this is still NOT a death sentence for me by any means. A doctor can and never will be able to tell me when I will go and how long I have left. I am too stubborn to leave this world without doing 95% of everything I want to do.

☆Sometimes I feel that when you are born with a disease the doctors slap your tiny baby butt with a stamp of an expiration date.

All a doctor can do when it comes to life expectancy is go by scientific studies, statistics, and somewhat of an educated guess. In my opinion this makes the doctors almost ignorant to a point, to say a set time that we will leave this world.

Basically, when it comes to CF and how they determine end stage, it is when you are past the point of no return. For many people that can be determined by many different factors. I can only base this on how I meet the criteria.

☆Please, do not get worried if our situations may be somewhat similar, because our bodies are different and so are the treatments. Unless your CF doctor tells you where you are to your face, do not just assume anything.

I was put on the lung transplant list back in May of 2014. My PFT's were bouncing around the low 30's with frequent hospital visits. Which is normally the first step to get evaluated for a transplant. After the week we spent at UPMC Presbyterian Hospital, meeting with the transplant team, and learning all about a double lung transplant we had a lot to figure out. Much like anyone would dealing with such a big and scary decision. What weighed on me more than anything was that pesky little bug that will always be in my system, Burkholderia Cenocpacia.

A lot of surgeons who specialize in lung transplants will not do a transplant on a Cenocpacia patient due to the complications. UPMC is one of the few in the US that will do it. However, after hearing the risks and statistics post transplant, I have decided not to go through with a double lung transplant.

A lot of you are wondering why I wouldn't go for a second chance at life, or why I would turn down something when so many have successfully lived years after transplant? The risks and complications with B. Cenocpacia are at a higher level than a CF patient without it. 

Taking immunosuppressant medications after transplant are hard enough on a Cystic who is negative for Cenocpacia, and it is terrifying knowing I would be even more susceptible for infections and rejection if and when it became active again. Fresh donor lungs with Cenocpacia have a higher risk of it becoming active and attacking the new lungs. Making it somewhat pointless.  We were told that the average survival rate post transplant of a CFer with Cenocpacia is roughly 6 months. To me once you add in recovery time, extra risks, and medications adding more risk, I do not see it ideal for MY life, personally.

☆Now, that is probably not the case for many or any other CFers, as anything is possible and no one person thinks alike. Some people who have had the transplant and Cenocpacia have surpassed that estimate by several months and even years. It is just not in the cards for me. Also, other hospitals will have a different survival rates and can change. May it be more or less time post transplant.

I believe that there is a "healthier" CFer in need of a double lung transplant that may be able to have better luck with the amazing gift of lungs having better odds than I do. I would rather live the rest of my life with the lungs I was born with and allow them to let me live as long as I can. Than live the rest of my days in agony, because of this crazy bug. Knowing, that I can possibly help someone else live by passing on donor lungs make this decision a little easier for me.

☆Turning down the transplant is one of the main reasons I am considered "end stage" and being put on a new course of treatment and in the care of Hospice.

Other factors that play a role in my medical standing are, my PFT's and my FEV1 dropping rather quickly. Starting out on November 6th my FEV1 was 32% and as of today December 26th they are 20%. 

☆Update as of July 20th 2015 my FEV1 is now 16%☆

The antibiotics are no longer improving my health, but only keeping me from falling further down the rabbit hole. At this point there is nothing else the doctors can offer me, other than a steady course of antibiotics to keep things stable. Keeping me informed and being here for questions or bad flairs, helping me with pain management, and staying comfortable. Every coughing fit, deep breath, laugh, or even yawn hurts horribly.

Now, as far as what I am doing and feeling about this I am in great spirits. I am not giving up on my dreams or giving in to my disease. I will be continuing to model for clothing lines and magazines as much as possible, I will be doing Sandi's Candi's in my free time, and I will be making memories with my husband, family, and friends. I have goals for today, tomorrow, and far in the future.

☆My hubby and I have decided that we are going to be taking more trips together so I can visit many states, we will be doing a lot of my bucket list items, and making sure we are always falling in love with one another every day.

♡My family and I are already pretty close, but I plan on continuing to build strong bonds with them. Along with reaching out to the other branches of my HUGE family, that I love and have embarrassingly not been able to spend more time with.

♢I plan on being able to make time with my friends and getting to see the mile stones that they reach in life. Babies, weddings, birthdays, and so much more. I am no longer going to allow CF to stand in the way.

☆♡☆I am focused on quality of life more than quantity of life at the moment☆♡☆

Never Give Up Hope,
   Sandi

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A Hospital Christmas

Christmas morning is slowing approaching and this year I can't help but be heavy hearted, a little blue, and feel somewhat bitter sweet. I sit here and think of the years that have passed and the years yet to come and I want to cling on to those memories for as long as I can.

When I open my eyes and put my feet on the ground Thursday morning, I will not look out of my window for a snowy winter wonderland. I will not be sneaking down the stairs to take a peak at the presents that Santa left unwrapped, before waking my parents up. I will not be digging through my stocking full of goodies to pull out the one lone orange that my mom always made sure to put in our stockings, that I never ate. I will not get to hand out everyone's gifts from underneath the tree, as if I worked for the Christmas Tree Post Office. Calling out the names on the tags and stretching as far as I could to hand them all out like I used to do for many years. Riding around singing and listening to Christmas music, quoting my uncle as we look at the beautiful lights around my small little hometown, saying "ooh ahh" to the prettiest lights, is out of the question for us this year.

My husband will not be waking me up to breakfast in bed with sweet maple bacon, Christmas pancakes, and the aroma of caramel drizzled coffee to perk up my morning. I will not be seeing the twinkle and pride in my husbands eyes as he hands me the presents that he purchased for me over a month ago. Watching me rip through his neatly wrapped packages with enough tape to be Fort Knox approved. Laughing at his silly gifts wrapped in albuterol and tampon boxes. I will not get the joy of seeing his reactions to his gifts as he opens them one by one after I do, like I am used to doing. We will not be getting ready to visit our families to share in holiday spirit. Making sure we match enough to be cute but not so much to make people sick with our cuteness and love for one another.

There will not be the traditional Christmas photo of me and Santa Claus, and if you didn't know my father is actually the real deal. Listening to my mom tell the story of these pictures as she always says "They have one from every year". As if she is still shocked by this tradition my father and I keep.  Photos of all of us sitting by a beautifully decorated tree, stuffing our faces full of Italian food, and spending time with one another. This year even the sugar cookies missed us as my mother couldn't bring herself to make them without our annual cookie party.

These are the things I will not have this holiday season. Instead what I will see this year as I open my eyes on Christmas morn, will be a dark and drewy hospital room, nurse's and doctor's in yellow paper gowns with emotionless faces covered by a thin blue mask. The smell of stale air, rubbing alcohol and latex gloves will fill my room. I will be awakened by an annoying intern coming in after I finally fall asleep, just to wake me up, make me sit up, listen to my lungs, and ask if I am breathing ok. I will be sent up rubber flavorless pancakes and burnt coffee, by a disgruntled hospital worker who just wants to be home with family of their own. Antibiotics will be ran every other hour and medications given constantly. I wil be forced to stay on my floor for the fear of "cross cantamination" if I mingle outside of my room. Making it more of a prison cell than anything else to be honest. Respiratory techs will be in and out with smiles and heart felt words as they know I do not want to be here. Doctors will come in almost like drones just repeating the motions that they do every day. As I lay in my bed sadly knowing it may be Christmas outside of this building but inside with me it is sadly another day in the life of the terminally ill woman.

Of course, my family will be here with bells on, my mom even mentioned a small tree. Lord knows that would be interesting to see, but I have painted Easter eggs in here before so why not! They will bring me dinner, gifts, and love. Sitting by my side and trying as hard as they can to make it seem like I am not in hell. To make it feel like Christmas for all of us as if I wasn't hooked up to oxygen and an IV pole. It will be a Christmas we will all remember, but not because of how great it is. Not because we were able to enjoy the winter weather and sip hot chocolate together.

It will be remembered as the Christmas where Sandi was stuck in the hospital and we had to put together a make-shift holiday and a fast change of plans as we all thought I would be home.

The good thing about it once you dig down deep for one,is that I will not be alone. I will have my family and yes, things had to change in order to make that happen, but they will be here. It is times like these that the reason for the season is most important. Giving of ones self and support is truly what I need this Christmas. I know I am loved and time with my family, no matter where it is spent is precious time that should always be cherished.

Just remember no matter where you are. No matter the situation be thankful for what you do have. The situation can always be worse, changed, and different at the drop of a hat.

Merry Christmas and Happy Holidays,
   Sandi

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18+ Sex & CF - Part Two

Parental Advisory
The sole purpose of this blog is to provide sexual information regarding sex with Cystic Fibrosis,for those who want information. Parents must evaluate the maturity level of their children. Please judge it's content and make sure that it is suitable or not. If not, I suggest they do not read this particular blog.

It is my belief that all of age Cystic's have a right to honesty on a personal level, about health and sexual experiences. The same way that they have access to information about Cystic Fibrosis, respiratory systems or digestion issues.

★YaY that little disclaimer never gets any less awkward. Anyways, I have already written a blog regarding sex and the need to have a good understanding in your relationship that can be read here. This blog is about the health benefits for having sexual intercourse while having CF.

☆Again ALL Cystic Fibrosis patients are different. My "knowledge" in this case is based on personal experiences along with medical studies.

Sometimes people forget that being sick takes a toll out on every part of our bodies. I have noticed that a lot of us are tired, in pain, often sick, stressed, have a low appetite for sex, along with issues when it comes to matters of the heart. Did you know that having sex can actually help you in a lot of those categories.

Yes, it is an enjoyable event that can take place between two people mature enough to understand what intimacy is all about. Yes, there is a huge taboo on the topic. Yes, it is very good for your mental, physical, and even relationship health and here is why.

Being close to your partner can soothe stress and anxiety that comes along with being sick. Touching and hugging can release your body's natural “feel-good hormone.” Being closer with your spouse will make you closer emotionally.

Sex and intimacy is linked to raising your self-esteem and happiness levels, too.

♥I know from personal experience that there are days that I truly feel terrible about myself, mainly my body. I mean let's face it I am a roller coaster of body sizes thanks to CF and medications. After being intimate with my husband I do feel a little pep in my step about the way I look and feel about my body.

As I explained in Sleep and CF our bodies are working overtime in order to breathe. In turn this makes our body need more rest than normal "healthy" people. During sexual intercourse if an orgasm is achieved, the hormone prolactin is released, which is responsible for the feelings of relaxation and sleepiness after sex.

♥So, this can be a pretty neat little trick for any of those spouses of a CFer who may be needing some extra sleep. Wink wink!

Of course our immune system is more compromised than most so it is important to always stay one step ahead of the game. Sexually active people take fewer sick days, according to sexual health experts.

♥Honestly, when I am healthy enough for sex once or twice a week I can feel a small, but noticable difference in my health. Now, this may be caused by several different factors.

You should still do all the other things that make your immune system happy, such as:

★Take ALL medications and vitamins.
★Do ALL treatments.
★Eat right.
★Stay active.
★Try for more sleep.
★Keep up with your vaccinations.
★★Use some type of contraception if not several combinations of different ones.

Lastly but not least by any means. While living with any disease you have a lot on your mind. In most cases you have more things on your mind then sex or having a healthy sex drive. However, the more often that you and your spouse are intimate the higher your sex drive will be. 

♥More so for women then men, the reason is very graphic, so I will not be explaining that in this blog.

Again, I can not stress how important it is to be mentally and physically responsible, healthy and mature enough to have sex. Always have a protection plan, remember CF is genetic and unless your spouse has been screaned for the CF gene you have no idea if they have it or not. Always understand and be there for your spouse during intimate situations and be in it for the two of you!!

Intimacy is healthy,
  Sandi

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